A decision has been made. Three days to go until it’s fruition. A lot in terms of momentum has happened since my first post about Frank. It’s funny, not in a haha way, but perhaps more unexpected than funny, how fast 10 months can go by when you are constantly waiting for the next appointment. The appointment date is set, two, three, four weeks away. You are searching for an answer, a plan, something finite to say “this is what’s wrong and this is exactly what we are going to do about it.” But instead you get the same information from a different doctor. A series of vague courses of actions with no definitive choice. And you are left wondering, is my situation that bad or do these doctors forget to meet and actually discuss my case in the month between appointments? More often then not, I’ve truly felt the former but in reality it’s probably a little bit of both.
Every appointment with the same result…more tests, more scans, more money. Seriously, I’ve had so many MRIs and CAT scans I could be a brain model. Let’s discuss numbers for a moment…
7…the number of specialists I’ve seen since August, not including the radiology specialist I never met that basically set the course of action for my treatment,
12…the number of scans, tests, and biopsies,
3…the number of Boston hospitals I’ve learned my way around,
2…the number of differing opinions from top rated specialists regarding my treatment,
1…the final decision everyone agreed upon.
Suffice to say, in regard to Frank the last year could be described as hellish. Beyond the new set of medical terms I’ve come to learn, or the mind over matter mantra of being in an MRI machine for an hour, or the frustration of having to pump and dump for 5 days straight because your scans with contrast dye couldn’t be scheduled the same day (my breastfeeding mamas out there feel me I’m sure.) Beyond all of that, there have been some valuable lessons learned.
- Know your health insurance. I won’t get into the nitty gritty politics of healthcare, though my experience with socialized medicine abroad was a very positive one, but we have pretty good insurance in comparison to some insurance plans I’ve had in the past. Until I was in the hospital for the birth of my daughter, I never really gave my health insurance too much thought. My employers always offered it, I paid for it, and I had routine doctors visits. Since then, I’ve learned about deductibles, renewed deductibles, diagnostic coverage, treatment coverage, top tier hospitals, low tier hospitals, and more. The reason I say, know your health insurance, is that it could have saved us quite a few dollars in advance to have certain MRIs and scans done at different places, avoiding ‘top-tier hospitals’ with outrageous copay costs. And we’re not just talking like a $20 doctor visit copay. Nothing makes you feel like someone just shit in your cheerios more than getting that bill in the mail. A little pre-planning and homework in advance can go a long way in future headaches and frustration.
- When seeing multiple specialists, believe in what they say about their own specialty and take what they say about what is not their specialty at face value. Living so close to the city, I am so lucky to have some of the best doctors in the country 5 miles away. In the more recent months, there have been several visits with particular specialists – a skull base surgeon, radiation oncologist, and jugular foramen surgical specialist. In each appointment, we have heard pros and cons, percentages and probabilities. However, whenever one specialist would talk about a different specialties – the radiation oncologist refer to surgery and the surgeon referring to radiation – those numbers were always slightly off. Making my position as the patient, confusing AF. One of the best pieces of advice I received from my sister was to listen what the specialist says about their specialty. That is what they know and practice every day. And in the long run, it was bringing up the differences in numbers to one doctor that was the motivating factor to get everyone to talk and decide on the same course of action for my treatment.
- Don’t freak out until there’s something to freak out about. Easier said than done, right? Well, perhaps this advice won’t work for everyone. In my situation, I have found keeping a level head incredibly important in not getting myself in a funk. That’s not to say I haven’t had my share of emotional moments. The first appointment to the neurosurgeon was when it really hit me that this is a big deal. After a visit to my favorite dive bar, that was the night I started writing about Frank. The writing has helped, exercise and working out has helped a lot, and having friends and family to talk to has helped the most. Frank is Frank and being an emotional mess about it is not going to change what Frank is. Frank could certainly be a whole hell of a lot worse. I’ll never get my singing voice back and we will have to wait to make sure the treatment works before we decide if more kids are in the future, but what I do have is a beautiful baby, a wonderful husband and a long life ahead of myself. And yes, that life will now involve continual check ups and possible future treatments and potential effects from radiation years down the road, but my life is now and I plan on living it like Frank was never there in the first place. So we will just keep living life one day at a time, keep laughing through it, and ‘keep on keeping on.’
- Be an advocate for yourself. I wish everyone had a close family member that is a doctor. I seriously do not know how I would have gotten through this without the help of my sister. Without her help translating MRI reports, helping me put together questions for my next appointment, flying out for second opinion visits, and constantly pushing me to advocate for my care. In the beginning of this mess, appointments were so far apart and we would spend hours between the waiting room, waiting in the office and the actual appointment being only 15 minutes. And I would always forget my questions. I’m not sure if it was that the doctors were so busy or just who I am, but I was so afraid of bothering them. I would send emails via the online health portal that would take weeks to get answers, usually after I called to follow up. On top of that, there was always confusion on who the F was supposed to be scheduling my appointments at the other offices. I suppose that’s the downside to having multiple specialists that are the best at what they do. But I still think in the back of my head, would my treatment be done by now if I had pushed harder and followed up sooner? And after almost a year of dealing with Frank, the concern about ‘bothering’ my doctors has dissipated. Though I respect their time and understand they are busy, I learned I have a right to my healthcare being prompt (as possible) and thorough.
- Get a second opinion. For anything big, don’t be afraid to get a second opinion. Though in the long run, it led to two completely differing opinions on what is the best course of action for Frank. But it laid out all of the options for possible care and with more scans (shocking), assessed the best course of action with the least of amount of risk. And I can now go into my treatment knowing that I explored all the possible options and believe I have the best plan of action. When originally deciding to go for a second opinion, I felt like the doctors I was currently seeing were going to be mad or insulted. Which in hindsight is absolutely, 100% ludicrous. Don’t be ludicrous, be thorough.
- Having a doctor that will advocate for you will change your entire faith in the medical community. I hope will all my heart, anyone reading these Frank posts will never have to refer to any of these lessons learned in terms of their own care. There is not really a whole lot else I can add to this other than I am completely grateful for the radiation oncologist that we’ve been working with. As I mentioned before, perhaps it can just be attributed to stubbornness, but his 100% positive belief that radiation was the best course of action over surgery was a catalyst for coming to a deciding factor. He was so sure once the surgeon saw the new set of scans, surgery would be off the table. But then it wasn’t. And a phone conversation later, the plan was set for the surgeon and the radiation specialist to discuss both of their opinions over the phone later that week. Without getting those two doctors to talk and find the disconnect, my decision toward treatment could have possibly been much harder and much different. Getting two doctors at different hospitals to talk on the phone doesn’t sound hard, but it is, and I will always be thankful they took the time to put the patient first.
Having learned those lessons, and a few more…like where not to park and that the footbridge over Storrow Drive from the MEEI parking lot is the scariest thing I’ve ever walked on…we are three days away from the start of my treatment. Radiation is our course of action. 45 minutes a day, 5 days a week, for 6 weeks. Though there are several potential short term side effects of the radiation treatment, I’ve been told several times it is very subjective and will depend on how my body handles the treatment. The exterior of my skin in the treatment area will require special care and will look and feel much like a sunburn. I may get nauseous, I may not. I may temporarily loose some hearing in my left ear, I may not. I may feel really tired, I may not. I may loose some hair in the treatment area, I may not. There may be soreness on the inside of my throat where Frank is pushing on, there may not. I may have to go on a temporary liquid diet by the end of treatment, I may not. And so on. Wednesday we start the process of finding out. Over the next six weeks we find out which ‘mays’ will become certainties and which will not, but for now, there is already one certainty…I am ready. I am ready to fight Frank.